Do you know of someone who is caring for a spouse or an aging parent that’s battling the progressive disease of dementia or the Alzheimer’s? These caregivers usually feel invisible to others. In a recent caregiver’s support meeting that I attend monthly, one of the ladies mentioned that she worked with someone for over 10 years, and just recently found out that both shared this common secret.
NC DHHS Aging and Adults Services reports, 1 out 5 adults in North Carolina identify themselves as a caregiver; 62% of these are caring for someone over the age of 65.
Family caregivers are unpaid and may juggle many responsibilities and household chores. They may have a Power of Attorney, Representative Payees or Legal Guardianship appointments which gives them the authority to make housing choices, estate plans and legal decisions, coordinate and attend medical visits, provide transportation which can include ending driving privileges, and manage the finances on behalf of their loved one.
Add to that, as dementia patients lose their independent functions, they may also need someone to prep meals, assist with bathing, dressing, etc. This is especially challenging if you work a fulltime job, have small kids (the sandwich generation), or have other commitments that place demands on your time and schedule. In addition to feeling emotionally overwhelmed, caregivers might feel isolated from their closest family members and friends while still caring for someone battling this neurological impairment.
First, What is Dementia? According to www.alz.org: Dementia is a general term for loss of memory, language, problem-solving and other cognitive abilities, severe enough to impair daily life and independent function. It also affects behavior, feelings and close relationships.
I also discovered that many people do not have a proper support system. Well, if it takes a village to raise a child, then it should take an entire community to care for an adult loved one with dementing functions.
I asked a few people to briefly share what it means to them to care for someone with dementia and how impacts their lives. Here’s what they had to say:
Diane M.
Caring for my 89-year-old mother for the past 6 years has been the hardest thing that I have ever had to do! In the early stages, mother was very combative and argumentative because she was fighting to maintain her independence. Although she has lost her vision and mobility, she is now in hospice care and doing much better. Amongst 8 siblings, I have an older brother who is the legal guardian, and the rest of the caregiving duties fall on me. The rest of my siblings don’t even inquire on how mother is doing or ask if I need help.
Diane mentioned that one of the saving graces over the years was the AARP Family Caregiving services. As a member, they would offer to caregivers movie time, hikes, walks, classes, and even take them out to the nicest restaurants and treat them to a meal.
Sharon F.
My 87-year-old father has severe dementia. If you have a close family member who has dementia, that first sentence is packed with a lot of emotions and responsibilities. Most of the time to the point of feeling overwhelmed and stressed. Who do I turn to? Our society doesn’t talk much about dementia. Few resources are available to help loved ones navigate caring for someone with dementia. There are some good programs and support groups, but finding them can be hard. I need information and support to care for my dad.
Rosemary’s Story
(Sister, Carla added that they have a CNA that comes in 5 days a week, plus a close family friend and housekeeper who are both very hands-on, and yet she still feels overwhelmed. Here’s why…)
First, there are no realistic, sustainable “hacks” for making a caregiver’s life easier. Go outside, take a walk, call a sitter, set a routine, are all wonderful platitudes, but are not based in everyday reality when someone needs constant care. Our father is 89, has gone completely blind over the last 2 years, is very feeble, and must wear hearing aids to hear anything.
Short-term Memory – Dad will ask me about the day and time of a doctor’s appointment several times. Sometimes it is within a day and sometimes it is over several days. However, since he cannot see a calendar, I am his only source of information. He constantly tells the same stories, from 30+ years ago, over, and over, and over… As his caregiver, I get sick of listening to them, but as his daughter, I feel guilty when I don’t listen because it could be the last time, I hear them. I have noticed recently that his recollection of my sister’s and my childhood paints a much more Norman Rockwell style picture than I remember.
Moodiness – His argumentative nature has increased significantly over the last two years. However, it is just as easily attributed to frustration with blindness, loss of independence, and his normal personality as it is to dementia. He is prone to have temper tantrums- much like a child. He pouts and then goes to his room.
Life as a Caregiver – There is little that makes full-time living with and caring for an older adult at home easier- except when they sleep. That is the only time a caregiver can breathe- not relax but breathe. At times, you hate hearing your own name because you know there is another task to perform or maybe a crisis. Yet, on the other hand you are grateful that your parent is still able to call your name. For me, this is a choice. Each day is fraught with caring for someone else’s needs before your own. You give up much of your freedom because of your commitment to someone else.
This was not a conscious choice in the beginning, but it does become your reality. At times, I long for twenty-four hours where the only person I need to take care of is me. However, because I know the guilt I would feel if something was to happen while I was away, I self-impose a “lock-down” believing that in the end, I will have done the right thing.
Lynne C.
The most challenging thing about caregiving for a loved one with Dementia for me was my age. I was only 22 when my Grandmother was diagnosed with Alzheimer’s. Her behaviors where totally unlike anything I had experienced. In fact, I wanted to learn more about how to deal with that, so I changed my life plans from being an accountant to volunteering in a nursing home. I eventually became a nursing home administrator, and now I run an in-home nursing agency.
Things I always tell people:
- When looking for a nursing home always ask to speak to the administrator. If they do not have time for you before your loved one is a resident, they will not have time for you once they are.
- When choosing a home care agency make sure it is a local and family-owned facility. The owner should be involved and not in some other State. When the owner cares, the employees will too!
- Remember you are not alone or the first person to go thru this; find a support group and share your testimony with others.
The Burn Out is Real – Ideas for Self-Care
- Carve out time for yourself. Consider:
- Taking a Yoga Class
- Make a Spa Visit for a Massage or Facial
- Take a quiet walk through the neighborhood
- Hot Bubble Bath
- Prayer & Meditation
- Seek Counseling
- Schedule Lunch with a Friend
- Rekindle a Friendship
In closing, the dichotomy of caring for a loved one can be equally a labor of love and wear on you like a tiny pebble stuck in your shoe. Building a network of family, friends and healthcare professionals, and then taking time out for yourself may not completely remove the burden, but it can help lighten the load. If you know of someone caring for a loved one with dementia, don’t let them be invisible. Acknowledge them, offer a listening ear, meal prep or provide transportation for the loved one if you can so that the caregiver can escape for a little R&R. And definitely, definitely let them know that they are doing a fabulous job!
Local Resources
AARP – www.aarp.org/caregiving
Family Caregiving Resources & Articles
National Family Caregiver Support Program (NFCSP) – https://www.ncdhhs.gov/assistance/adult-services/family-caregiver-support
Offers a range of services for family caregivers including respite care to temporarily relieve caregivers of duties
NC Dementia Alliance – https://Dementianc.org
Education and Empowerment through Community Outreach, and local Caregiver Support groups statewide listings
NC DHHS Aging and Adult Services – https://www.ncdhhs.gov/divisions/daas
Listings of local government, private and non-profit organizations that support aging adults and their families
NC State Employees Credit Union – www.ncsecu.org
Has professionals with can assist with Estates and Trust planning, and provide resources for Fiduciaries (those who manage money on behalf of another)
Wake County Clerk of Superior Clerk – www.nccourts.gov
Guardianship Services – https://www.nccourts.gov/help-topics/guardianship
Estates and Wills – https://www.nccourts.gov/help-topics/wills-and-estates/estates
WakeMed Home Health Care Services – www.wakemed.org
Physician can refer patients for an assessment for in-home nursing care, occupational therapy, speech therapy, and transportation services if needed
